My Story

Have you ever had a migraine? The kind that makes you sensory sensitive and felt like your in a complete daze to the point where you don't remember the next day? Its brutal right? Now Imagine going to over 30 doctors at 3 health care systems including mayo clinic "the best neurologists" over the course of 4 years.  With all of them saying "you have migraines.. Lose weight. Nothing is wrong all tests are normal."  All while losing aspects of yourself and the life you hoped to have to the point where other people are helping you bathe, walk, watch you eat because of choking, drive, and you can't think clearly.  4 years if laying flat so the world didnt spin and you didnt black out becayse there wasnt anything else to be done.  Then I finally found one doctor who ran the tests noone else even thought of doppler ultrasounds to look at blood flow and ct venograms.  Finally I have all the answers and Im looking at several surgeries for numerous congenital conditions caused by bones that aren't suppose to be where they are because of ehlers danlos and birth defects.  I have severe eagle syndrome (literally the styloid bone is stabbing my brain all day), bilateral jugular compression syndrome with 90-100% blockage on both sides with the ride side has reflux and showing signs of starting to perforate, left shoulder arterial thoracic outlet syndrome (the artery to my left arm is.pinched off which cam resulr in limb loss), and superior mesenteric artery compression (small intestine gets 50% less blood flow). The doctor thinks i may also have tethered cord syndrome but I wasnt able to have the test due to my tremors being so bad and will have to have it once I have some of the other surgeries done first.  I didn't win the lottery anyone wants to win but I am thankful these conditions are fixable to an extent. It is hard to say how much damage will remain after the surgeries as noone knows. But without them I wont survive.

Currently waiting on insurance approval to do the surgery with dr constantino.  Im ready to feel better and gain my independence back.